How to balance confidentiality with openness in Discourse configuration

(lamp515) #1

This is my first post here, though I’ve been reading for several months.

For 15 years I’ve run a little forum in a walled garden. Our community of about 400 subscribers is for parents of children with a certain medical diagnosis and run on a listserv email list. I’d like to transition to a Discourse forum, but configuring the forum to guard confidentiality is stymieing me.

We have two primary types of posts;

  1. Facts and science: Medical research, medical education, discussion of medical literature, explanation of the state of medical knowledge to new parents (and oldies). These posts really should be public, and should engage a much wider audience than our little group. IMHO, some of the foremost experts on this particular diagnosis participate on my little list. Identifying the poster is good.

  2. Parental support. Discussion of a child’s symptoms, blood test results, behavior, educational difficulties, parental difficulties, familial difficulties, fears, dashed hopes, realized dreams. It is this second type of post that I want to ask you all about.

In my community it is the same people who post the facts and science who provide parental support. It is the same people who ask questions about facts and science who ask for parental support.

I’m looking for a way to provide confidentiality for the families and for these children who are being discussed in the most intimate details, while making the vast store of medical knowledge available to the internet at large.

I’ve seen this dualism on other listserv/usenet groups. Extensive medical knowledge is being shared by those who have been-there/done-that, but in a walled garden where they are safe to share intimate medical details.

Do I just tell everyone to get two different accounts? One through FB, Yahoo, etc, and another for the personal posts with a new email that gravatar won’t recognize? It just seems like a mess.

Has anyone started a discourse forum from a support group where private information had been shared? How did you balance confidentiality with the discourse openness?

(Luke S) #2

There has been a little discussion about some form of anonymous participation lately. You might check out these topics, as they may be relevant for you:

Could you provide a little clarification on your use case?

  • If you are primarily concerned about preventing random strangers on the internet from seeing the parental support discussions, but want other parents to be able to participate, and identify each other, you can create a category that is only visible to members of a specific group. You can manually add persons to that group. The challenge then is identifying who to trust for this category or set of categories.
  • If your support discussions are meant to be One-on-one between a parent and one or more of your experts, and you are ok with the experts seeing the identity (Well, the username, at least) of the parent they are talking to, Discourse’s private messages might work well. Downside: advice that may help other parents in similar situations will remain private. PMs can be accessed by moderators/admin, so keep this in mind when choosing your deputies.
  • If you need your parents to be able to maintain their anonymity towards each other, and towards your experts, you would probably be looking more at one of the anonymous features in the discussions I linked. It might be that such discussions would also be placed in a private category, like in the first scenario. I would suspect that in such a case, the experts, at least, would participate under their normal identities.

(lamp515) #3

Thanks @Sailsman63. I don’t think an anonymous posting mode would work for this use. Let me see if I can describe this use case better.

Suppose I make a category for Regular users where they can post more private details without the spying eyes of the world. There are two problems that I see with this.

The first problem is that the newbie doesn’t have access to that category. So, the newbie finds a likely-looking category and posts their question, “Help! My child is in the hospital, and these are the symptoms. Has anyone seen this before? What should I do about this?” It is the experienced parents who would be replying. Their best information is about their experiences with their own kids. So they can either withhold information or they are forced to post in a more open category.

The second problem with this is the ordinary use of Categories is defeated. Ideally, these posts should be sorted by the topic of discussion, rather than the openness desired of the answer.

Right. And I really don’t want to be evaluating strangers for trustworthiness. Best to have a configuration that handles that.

A lot of the support now already happens through private email, and I would expect a robust back-channel in a discourse forum. It is not the one-on-one that I am concerned with.

One thing to understand about this type of group is that the members are the experts. I’ve seen this with multiple diagnosis-related groups both on L-soft (listserv) and on Yahoogroups. There is no expert better than the person who has lived with the medical condition and who has researched the heck out of it. Many of these groups have a “guru” with professional credentials, but the nature of these groups is often that the guru is just one credible voice among many. So, with a long-term medical condition, the group members move back and forth between giving and receiving support and advice over a period of years.

My group is a subset of this type of group, in that the members don’t have the diagnosis themselves, but they are caring for children with the diagnosis.

Not necessarily, but they should have that option. The connectedness of Gravatar to their email address means that if they have an avatar elsewhere, it shows up with their posts. I don’t want the users to be anonymous in a way that all anonymous users appear the same to the reader. But they should be able to post personal information in a way that they are recognizable as a particular user, but not in a way that discloses their child’s identity.

(Jeff Atwood) #4

Great discussion. My main reaction to this is, “does this forum really need to be public at all?”

I understand there is good medical information in there that might benefit others, but perhaps if those people can find your forum and join it, they would then gain access to this information? So the main barrier is making sure your forum “we exist” page is findable and publicized at the right outlets?

It really depends how rare the medical conditions are we’re talking about, doesn’t it? If they are rare enough, certainly that community will help others find their way to the specialized private forum, so that they might join it?

This is absolutely a primary use case for Discourse, a specialized community, I just wonder if scoping it up to a part-public part-private thing from its 100% private origins is a wise choice. Changing from a mailing list to “anything else” is quite painful in and of itself (socially, technologically) without adding a big scope change to the manifest.

(Tobias Eigen) #5

@lamp515 this is a really interesting and useful discussion - how have you proceeded since January?

I agree with @codinghorror that your use case seems to be best served with a completely private forum. What I would consider adding is a blog or resources section to your site that aggregates the scientific knowledge for general use, minus the personally identifiable details. This takes some editing and curation, but that can be part of the value added service you provide for your community.

Another way to do this might be to use two separate discourse setups - one explicitly private (for direct help) and one public (for aggregating and sharing knowledge).

A benefit of discourse that I didn’t see mentioned above is that the PM system is not just one-to-one necessarily - you can also bring more people into a private conversation on a trusted basis. So you let a new person who needs help sign up and PM you (the trusted connector) with a specific question that is very privacy sensitive, and you get back to the new person with some answers and to explain how your community works. Then with their permission you introduce a few more people who you know have more knowledge from their personal experience. Then you or one of those people can introduce this new person to the wider (still private) circle to get more help from everyone.

(John Oeffinger) #6

Thank you for suggesting the one-to-many PM capability using a “trusted connector.” This thread helped me better understand how to potentially use Discourse with another one of our funded projects. That project involves parents and experts for children with genetic issues. Thanks to everyone on this thread for this illuminating conversation.

(system) #7

(Sam Saffron) #8

I would like to expand that over the past … 4 years we have expanded our group support in Discourse quite a lot.

You can now have “private groups” of users where a user can “request” membership and even a non staff user can manage.

I think that in many highly sensitive cases parents want information to be private and hidden from Google, I feel that often people do not want anonymity, all they really want is for Google not to have pictures of their kids and access to information that is sensitive.